Monday, August 17, 2009

Death Panels

The phrase seems overwrought to me. There seems to be an element of using this club because it’s effective, not because it’s strictly accurate. Let me tell you how this would have worked. There would be lots of forms involved. Doctors, or designees of the social work type, would have a discussion with you. They would have a form in front of them that tells them what must be included in the discussion. They would tell you about your rights – you would have to sign for that, both for your rights in general, plus any specific rights deemed important enough to be mentioned specifically. You would sign for those extra. Then this social worky person would ask you what your choices are, probably in checklist style, to make sure nothing gets left out.

It’s well meant. One of the cost-drivers in medicine is people in end-of-life situations who haven’t told us what they wanted. There is obviously some hope that if we find out what everyone wants, some of them will let the system off the hook on keeping them alive. There’s not an especial initial need to see this as the government scrounging around for grampies they can unplug. They’re just hoping to find some grampies who would prefer to be unplugged early. I would be one of those grampies, for example.

The problem is going to be in how this plays out over time. With added permission to withhold treatment, Holland has found that 8% of the time, doctors didn’t really have any permission from anyone to pull the plug, they just thought it best. Doctors don’t really look at your life and your body the way that you do. They will see some things more clearly than their patients, but unavoidably, their own view, individual or collective, of what kind of life is worth living will steer their hand.

Would there be any unintentional pressure to convince you to reduce care? It wouldn’t have to be a cartoonish “Now Barbara, you wouldn’t want us to have to go to ridiculous lengths, would you?” It could be just a mild social pressure for everyone to scale back a bit.

It not only could be that, it would be that. Who in the system is going to encourage you to ratchet up the care you require? What our society considers to be the default settings would steadily drop.

So we would see 1) an increase in the number of people whose wishes we know. That’s a good thing. We would also see 2) an increase in the people we let go. That’s a natural consequence of 1), but more mixed. It will fairly rapidly lower the threshold of what the society thinks is the range of “proper” things to do. People who want support withdrawn quickly will gradually be seen as having having made the right decision, those who want heroic measures as having sucked up resources unfairly. Like all social changes, the argument will not be in the realm of “unplug granny, we want to go to Cancun,” but at the margins. We will drift toward greater acceptance of the idea that old folks shouldn’t want to use up resources. They should want to sign out sooner. I understand that. It’s how I feel about myself – but I feel less strongly about that when it’s my wife or my children I’m talking about.

How far will those slopes slip? I refer to both the doctors’ slope and yours. Maybe it is where we want to go. Maybe previous life expectancies were more natural.

Whether it is irony, paradox, or fortuitous that this is occurring just as we are on the verge of medical discoveries which will extend life greatly I can’t say. The two forces together would seem to be driving us toward a world in which we have much more say about when our life is to end, about what is a life worth living. Emphasis on “seem.” The social consensus will make it more difficult for individuals to make truly free choices. Which is true about most things anyway. How far will that slope slip?

I don’t think character necessarily improves with age, at least not indefinitely. We don’t know what personality changes go with transitioning from being an active nonagenarian to active centurian and beyond. What if some attitudes that I already see growing in myself in my 50’s – irritability, impatience, wanting to narrow my field of face-to-face contacts – continue over the decades, regardless of physical health? What if I am greedy for more life and increasingly don’t care what effect I have on others?

One additional thing. We think certain limitations on our lives would be unendurable, but when we get there, we find they are endurable and we want to go on living. Which view is more valid, when we were 72 and said “such-and-such would be no life at all, put me away,” or the thought at 82 that “it’s not so bad after all, I’ll keep going, thanks.”

4 comments:

Before my father died suddenly, I had broached the subject of end-of-life decisions with him when he went in for knee-replacement surgery. He lived alone and I was the one who would have to be asked about what he wanted if something went wrong.

I was shocked when he responded very forcefully that we shouldn't unplug him.

I was shocked because I would have thought his response was going to be the exact opposite of that. His general attitude about life and making a fuss was the polar opposite of his attitude about facing death.

It's hard to predict how people will feel when they are facing the possibility of the end of their lives.

I think there will be increased pressure for people to sketch out what they want their loved ones to do. It will be seen as the "responsible" thing to do. I don't necessarily disagree with that . I wouldn't want my loved ones wringing their hands wondering what to do with me if I couldn't speak for myself.

It's worth noting that "death panels" - a hell of an evocative phrase - did not refer to the end-of-life counseling provisions but to the medical-treatment-efficaceousness panels that have been proposed. The idea being that panels or committees will meet and decide which groups of people are permitted what sorts of care, based on primarily economic and social criteria.

This wasn't too clear in the news coverage, although I thought Palin's initial statement was fairly clear. (On the other hand, she didn't specifically reference Dr. Ezekiel Emmanuel's article on the matter, although she quoted it - I recognized the reference only because I'd been following this aspect.)

Part of this actually is already in law - establishment of a medical effectiveness panel to make recommendations as to appropriate treatments, as well as federalization of all medical records, was in the stimulus bill a few months ago. There is no provision as yet for personal review of treatment - that is, a panel or bureaucrat deciding specifically whether this person gets such-and-such care - but it has been discussed and it would surprise me if it failed to show up in the regulatory implementation of Obamacare. The pieces are in place already.

Possibly-relevant aside: I have a medical care directive. In this state, it must be based on the state-provided form to have legal effect, and I can tell you that - as someone who's currently more concerned about being denied treatment, food, and water than about having them imposed - it was very difficult to adapt the required form to my needs. The assumption throughout is that you will specify the treatments you *don't* want, not the treatments you do want. I am reasonably intelligent. verbal, and well-informed about the law in this area, and I had a lot of trouble with it. What would happen to someone without these advantages who does not want treatment to be denied? It's not hard to see that the form pushes people hard in a certain direction, and if filling out the form becomes mandatory or "strongly suggested" by a doctor operating under P4P compensation incentives... more and more people will, on paper, "consent" to having treatment withdrawn.